Sad and confused

[GrannieD]

Re: previous posts.

Im feeling very stressed at the moment and hubby has said I’ve shot myself in the foot…

I’m having horrible dizziness and nausea. Bloods constantly showing neutrophils low. I'm having MRI scan on Monday

Spoke to consultant and just happened to say I’m not sure this medication suits me. Started Tocilizumab way back in July/august 2024 injection every week, (started every 2 weeks to see if it helped, it didn’t). bloods every 12 weeks, working out I should have had my 3rd blood test in 3 weeks time but I’ve actually had 9 in all. so yes I’m worried My consultant told me to stop taking it then…. Have since had messages saying my next blood test in June has been cancelled, my future prescriptions have been cancelled and if I have problems to go to GP. I’ve been a patient at Hospital Rheumatology for over 35 years, I feel as if I’ve been brushed aside. This is also a new rheumatologist as my previous one retired. I suppose I’m reaching out for reassurance.

Sorry for the rant, I hope I’m not sounding like a nuisance.

[Runrig01]

The blood tests have probably been stopped, as they would have been part of the monitoring of your meds. Now your meds are stopped, they don’t need taking so frequently. Is the intention that you’ve followed up again, by the rheumatologist or has he discharged you back to the GP.

If you feel misunderstood, then you could call his secretary and explain. He may then call you back to discuss further. If they refuse to speak with you, then you could go to PALs, who will try to resolve your issues. These meds are expensive, and they have to assess if their still working, if their not, they have to stop them, otherwise their wasting nhs money. Yearly they cost around £10,000 per patient per year, and that doesn’t include the added costs of blood tests. Hope you manage to resolve it 🤗

[GrannieD in reply to Runrig01]

Thank you. Yes very expensive drug but if it isn’t suitable where do we go from here, I don’t want to suffer flare ups. And being truthful if MRI scan showed nothing to do with Tocilizumab I would happily take it. Do you think having a word with his secretary would help. I don’t want to be misunderstood.

[Runrig01 in reply to GrannieD]

Each Trust is different around the rules re biologics. Most have their policy re biologics online,mine certainly does. It can’t do any harm phoning the secretary and explaining the situation. It may be worth waiting till you’ve had your scan, as that will give them useful info. If there’s no inflammation, it suggests the med was doing its job. Also your DAS scores should be improving if the meds working

[GrannieD in reply to Runrig01]

Thank you so much, I still have medication in fridge with a date on that goes to August 2026. I really don’t want to waste it. Im prepared to use it if it’s not causing symptoms. I’m already thinking of speaking to secretary tomorrow.

[Spanelmad in reply to GrannieD]

Definitely follow up with the secretary, you need to clarify the situation.I've spent this week doing the same with neurology.

[GrannieD in reply to Spanelmad]

Thank you and best wishes to you.

[Spanelmad in reply to GrannieD]

Fingers crossed for you!!!

[MistyDay]

I understand your anxiety. I am glad you are an MRI scan on Monday as Monday will come soon and hopefully give you peace of mind.Your low neutrophils are probably due to being on immunosuppressants. Mine went low when I first started benepali, and I was told I had neutropenia. My rheumatologist said they weren't worryingly low . I was anxious too , and my kind GP arranged a repeat blood test for me as an interim. I stopped taking my benepali and they came up a bit. I went back on it, and the last blood test was ok ish. Having another blood test next week. A friend had very low neutophils on sulphazalazine and was hospitalised. She was taken off this medication. The levels came up and she now has infusions. I think low neutrophils happen to some people on RA medication. RA medications are not without risk, but high inflammation due to RA can harm ever bit of us. Good luck on Monday.

[GrannieD in reply to MistyDay]

Thank you. Consultant rang me to say I was neutropenic and to go to A&E if I felt unwell, that was as I was leaving drs way back in November when all this nausea and dizziness started so naturally I was scared. Until I’m sorted with MRI scan I’m going to be a wreck which doesn’t help matters at all.

[Deeb1764 in reply to GrannieD]

Follow up with the Secretary ask for clarification on what they are doing for you over the coming weeks and what about medication. Write the points down and don’t put the phone down till she has them all. Don’t don’t do too much detail so that’s he totally understands what you need and expect response for.

Good luck 🥰

[GrannieD in reply to Deeb1764]

Thank you.

[janmary]

it’s always tempting to think that new symptoms are caused by existing conditions and medications -especially Ra and its treatments- but other explanations for new symptoms need to be excluded or things get missed.

perhaps ask GP to help ? He or she could help with liaising with the rheumatoid arthritis dept

[GrannieD in reply to janmary]

Thank you, I’m still wondering what to do for best, I may wait until I have results from scan hoping I find out sooner rather than later what’s causing dizzy and nausea.

[rabbits65]

Never say or think your a nuisance, This is why this site is brilliant and helpful. I do hope you feel better soon.

[GrannieD]

thank you so much, it’s good to talk to so many, in similar situations.

[MyCLLJourney]

GrannieD, I suffered with nausea for about a year after having meningo-encephalitis. The worst month I threw up 22 times. I was in search of something, anything that would help. I was looking for ginger chews, but they all were loaded with sugar. So I asked the cashier if they had anything else that would help. She came out with a homeopathic med called carbo-vegetalis. I said what the heck, I've tried everything else and nothing I've searched for has worked. I started taking it and immediately, the nausea quit. Mine was related to the vegus nerve, but it might help you too. Just a suggestion.

[GrannieD in reply to MyCLLJourney]

Oh thank you so much. I was admitted to hospital last week because symptoms were worse, I think I’ve gone through tons of ginger, ginger tea, ginger biscuits, even today I’m telling myself I’m not dizzy and I don’t feel sick……….but I do. I shall seek out your suggestion. THANKS

[Star307]

defo follow up with your rheumatologist and complain to PALs as suggested if you don’t get anywhere. Good luck!

[GrannieD in reply to Star307]

Thanks I have a MRI scan booked for Monday morning, hopefully I will get some satisfaction from the result which I hope I get quickly. I’m literally simmering on lots of things at the moment.

[Lex54]

You're not ranting! Contact your Rheumatologist Nurse hopefully they'll sort things out! The GP shouldn't just stop your medication.

[GrannieD in reply to Lex54]

It was my Consultant who stopped it, because of my symptoms going on for months and my concerns, but he didn’t offer anything else. (I was surprised). I know my previous consultant would have been more sympathetic Thank you